Invisible Illness Awareness Week 2016: Our Voices Need to Be Heard
Never heard of Invisible Illness Awareness Week? You're not alone. Jody Smith sheds a little light to make it more visible
Discuss the article on the Forums.

Crawley: Natural course of CFS/ME in adolescents

Discussion in 'Latest ME/CFS Research' started by Cheshire, Jan 20, 2017.

  1. Cheshire

    Cheshire Senior Member

    Messages:
    1,121
    Likes:
    8,999
    Natural course of chronic fatigue syndrome/myalgic encephalomyelitis in adolescents

    Tom Norris Simon M Collin Kate Tilling Roberto Nuevo Stephen A Stansfeld Jonathan AC Sterne Jon Heron Esther Crawley


    http://adc.bmj.com/content/early/2017/01/19/archdischild-2016-311198.full.pdf html


    The problem of diagnostic criteria is still a burning question for this study. Althought claiming that they can't say they're studying "CFS/ME" in the text because children haven't been diagnosed by a physician but an entity they call CDF, the title and the text still refer constantly to CFS/ME. More muddling of the water...

    And she still uses weakened NICE criteria:
     
    MEMum, medfeb, Valentijn and 6 others like this.
  2. hixxy

    hixxy Senior Member

    Messages:
    1,120
    Likes:
    1,288
    Australia
    How does Crawley manage to push out so much "research"? The stream is relentless.
     
    Skycloud, Sidereal, Valentijn and 7 others like this.
  3. trishrhymes

    trishrhymes Senior Member

    Messages:
    2,153
    Likes:
    17,870
    I suspect most of them are student projects which she simply puts her name to. Set them a meaningless task. Wait six months. If they haven't died of boredom or called your bluff, you will have another paper to publish.

    If you have a large set of questionnaire data you can endlessly mine and p-hack for spurious and meaningless results and award MSc and PhD degrees on the results, and no ethics or understanding of what ME is, you can carry on for ever.

    If you have tame editors of Psych journals willing to publish junk you can keep up an endless stream of dangerous drivel.

    Easy.

    :bang-head::bang-head::bang-head::bang-head::bang-head:

    EDIT: This is one of the many reasons I'm opposed to MEGA.

    Crawley is the ME 'expert' on it, and all it's promising at the moment is the collection of a vast set of questionnaire data on 12000 loosely defined chronic fatigue patients and to set up and store a biobank of samples from them. No plans yet to actually do biomedical research.

    This would give Crawley enough questionnaire data to mess about with for the rest of her career... Doesn't bear thinking about.
     
    Last edited: Jan 20, 2017
  4. ash0787

    ash0787 Senior Member

    Messages:
    299
    Likes:
    576
    seriously ? didn't she post one less than a week ago ? I'm still looking at getting one analysed
     
    MEMum, hixxy and trishrhymes like this.
  5. dyfalbarhau

    dyfalbarhau

    Messages:
    30
    Likes:
    172
    She is admitting she isn't actually studying children with verified ME/CFS, and yet she goes on to say she is studying ME/CFS. If we truly "know so little" about this illness how can we find a suitable proxy for it for use in research? Shouldn't we instead focus on researching people we know actually have the illness? Shouldn't that be the priority...?

    How can you research the natural course of an illness if you are not actually researching that (or a related) illness?
     
    Sea, MEMum, medfeb and 10 others like this.
  6. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
    Frustrating. Feeling better after resting shouldn't be an exclusion.
     
    MEMum, SamanthaJ and Invisible Woman like this.
  7. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
    Valentijn likes this.
  8. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
    One reason which would reduce patients been classified in the same category at age 13, 16 and 18 is that different methods of defining the condition at these time points were used.

     
    MEMum, Hutan, potbatch and 2 others like this.
  9. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
     
    Last edited: Jan 20, 2017
  10. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
     
    MEMum, Valentijn and Esther12 like this.
  11. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
    Table 1 shows that 29% of those classified with chronic disabling fatigue at 18 years had 4 or more of the CDC criteria.

    Given the prevalence of chronic disabling fatigue at that age of 2.99%, that gives a prevalence for the Fukuda/CDC criteria of 0.8671%.

    Note that one of the 8 CDC criteria was not assessed, so this would be an underestimate.

    However the CDC criteria also look for a physician assessment to rule out other conditions.
     
    Last edited: Jan 20, 2017
    MEMum, Valentijn, Esther12 and 2 others like this.
  12. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
    I doubt all of these should be excluded as some people will have CFS and depression.
    In comparison to the 40% figure, 19.5% in the non-chronic debilitating fatigue group had depression at age 18.
     
    Esther12 likes this.
  13. JohntheJack

    JohntheJack Senior Member

    Messages:
    178
    Likes:
    946
    Swansea, UK
    I was struck by the 29% figure.

    Note that they then go on to say:

    Furthermore, as we have defined CDF using a 6-month criterion and adopted a number of exclusionary criteria used in the classification of CFS/ME, we have produced estimates that are comparable with the widely used CDC definition of CFS/ME, albeit with more relaxed criteria regarding the number of symptoms required to be present (one rather than four).

    29% is, apparently, comparable.

    The whole study is awful. Meaningless waste of time and money.
     
  14. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    Messages:
    5,227
    Likes:
    31,871
    This invention of CDF looks completely bonkers. The abstract makes no sense at all, so I am not bothering to look further. Presumably this is a tactic to avoid any criticism about this not being about ME/CFS. They make it clear that it is not about ME/CFS, but is. Simple, everyone should have thought of that before.
     
  15. 2kidswithME

    2kidswithME

    Messages:
    63
    Likes:
    489
    Oxfordshire, England
    If it isn't about cfs/me, then why lure readers in with that in the title?!
     
    MEMum, Daisymay and Comet like this.
  16. AndyPR

    AndyPR Senior Member

    Expecting sense from anything Crawley is involved with is optimistic in my opinion. :)
     
    Snowdrop, MEMum, Starlight and 7 others like this.
  17. Barry53

    Barry53 Senior Member

    Messages:
    2,277
    Likes:
    13,704
    UK
    If this isn't word salad I don't know what is. I think she might benefit from a bit of psychiatric support.
     
  18. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,522
  19. Kati

    Kati Patient in training

    Messages:
    5,463
    Likes:
    19,556
    (Not a recommendation)

    Natural Course of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis in Adolescents

    Objective
    Little is known about persistence of or recovery from chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in adolescents.

    Previous studies have small sample sizes, short follow-up or have focused on fatigue rather than CFS/ME or, equivalently, chronic fatigue, which is disabling. This work aimed to describe the epidemiology and natural course of CFS/ME in adolescents aged 13–18 years.

    Design
    Longitudinal follow-up of adolescents enrolled in the Avon Longitudinal Study of Parents and Children.


    Setting

    Avon, UK.

    Participants

    We identified adolescents who had disabling fatigue of >6 months duration without a known cause at ages 13, 16 and 18 years. We use the term 'chronic disabling fatigue' (CDF) because CFS/ME was not verified by clinical diagnosis. We used multiple imputation to obtain unbiased estimates of prevalence and persistence.

    Results The estimated prevalence of CDF was 1.47% (95% CI 1.05% to 1.89%) at age 13, 2.22% (1.67% to 2.78%) at age 16 and 2.99% (2.24% to 3.75%) at age 18. Among adolescents with CDF of 6 months duration at 13 years 75.3% (64.0% to 86.6%) were not classified as such at age 16. Similar change was observed between 16 and 18 years (75.0% (62.8% to 87.2%)). Of those with CDF at age 13, 8.02% (0.61% to 15.4%) presented with CDF throughout the duration of adolescence.

    Conclusions The prevalence of CDF lasting 6 months or longer (a proxy for clinically diagnosed CFS/ME) increases from 13 to 18 years. However, persistent CDF is rare in adolescents, with approximately 75% recovering after 2–3 years.


    (Bolding mine)

    Link to Medscape (you may need a free membership)
     
    Last edited: Aug 23, 2017
  20. anni66

    anni66 mum to ME daughter

    Messages:
    208
    Likes:
    815
    scotland
    Why does the title refer to cfs/ me when it is clear frm the abstract that no selection for this has been made ???
     

See more popular forum discussions.

Share This Page